Take Charge! Build your Team
What is so special about the “comprehensive care” team?
A comprehensive care approach goes beyond treating movement and non-movement related symptoms of PD. It aims to work “outside the box” to reduce disability, maintain independence, promote healing and enhance safety. Members of the treatment team concentrate on all aspects of the patient’s needs: movement, ability with daily activities, communication and social needs, success in relationships, self awareness, emotional health, wellness and even hobbies. Counseling, education and support are an important function of each team member, and comprehensive care is enhanced when you, the patient, take an active role in your care. This combination of individual initiative and group concern give you the tools to do your best, strengthen hope, and deal with life changes, daily frustrations or new challenges.
Who is on the team?
Your own comprehensive care team may vary depending on the resources that are available, and its members may need to be changed as you change, age or the disease progresses. One thing is certain: central to the success of treatment focused on living well is active participation by the person with PD. So you and your family are the most important members of the team. Your team may include a primary care doctor, Neurologist, Psychiatrist, physician assistants, nurses, social workers, physical therapists, occupational therapists and speech and language pathologists. Creative therapists in art, music and recreation also play an important role, and some teams include counselors, psychologists or neuropsychologists.
Don’t limit your team to medical specialists. You may find helpful healing professionals in your community that add a new dimension to wellness. One that aids healing by focusing on your emotional and spiritual wellbeing. Examples of community specialists include exercise trainers, yoga instructors, Tai chi instructors, massage therapy, acupuncturist, spiritual advisors and meditation specialists to name a few. Don’t forget about support groups since your peers can offer valuable experience and support.
How do you find a team?
You may have a medical center that specializes in Parkinson’s care in your community. If you do not, you can still assemble your own team. Avoid making this an overwhelming task. Begin by prioritizing your problems or concerns and search for a specialist that can address those issues. Use the Comprehensive Care Worksheet to identify rehabilitation specialists that can help with your problems.
Check your insurance carrier as there is a wide variation in coverage for rehabilitation, behavioral health, acupuncture, and nutrition services. More insurance plans are covering wellness programs, massage and acupuncture therapy. If you are trying to find a therapist in your area begin with your peers. Ask members of your local support group which therapists or specialists work with PD or have helped them. National foundations such as the Parkinson’s disease Foundation, American Parkinson’s Disease Foundation and National Parkinson’s Foundation can help you find a specialist in your area. Finally a call to your local hospital may connect you with rehabilitation therapists that have experience treating neurologic conditions.
Some treatments require a prescription or referral from your doctor. The Comprehensive Care Worksheet can help you identify medical therapists that can help you with your needs. You may wish to share this worksheet with your physician so they understand why you are asking for a specific referral. It is sometimes helpful to prioritize your problems and begin with one referral at a time. For instance, if you are interested in seeing physical therapy to start an exercise problem but also note that speech problems are interfering with your job as a sales person it might be best to focus on the more urgent problem. Begin with a visit to the speech therapist if your busy life makes it difficult to do everything at once. Ask your speech therapist to review other problems you may have and the worksheet with you to help you with your decision to include other therapists.
Author: Monique Giroux, MD
Copyright 2011 Northwest Parkinson's Foundation Wellness Center